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Living with haemophilia

General information on haemophilia and day-to-day life with haemophilia

When it comes to living with haemophilia, life comes first.

For people living with haemophilia, maintaining a high standard of health ensures the ability to live life to the fullest and participate in various activities. This is not limited to physical activities such as playing sports, although these are important. It also means being able to do everyday things, like walking to school, without the worry of a bleeding episode.

Although people living with haemophilia usually receive treatment to protect them from bleeding, that doesn't mean their treatments need to be prioritised over other opportunities. It is possible, for example, for a person with haemophilia to travel or study full time and enjoy all the opportunities that life has to offer.

Protecting the standard of health

Treatment of haemophilia

Injecting the missing clotting factor

Treatment of haemophilia consists of injections to replace the missing clotting factor. There are two types of injection approaches:

Prophylaxis: regular injections of clotting factor are given to prevent bleeds before they start.

On-demand: injections are given to stop bleeding when it is already occurring

People on prophylactic treatment have regular injections to make sure that they have enough clotting factor in their blood to prevent a bleed. The World Federation of Hemophilia guidelines recommend that prophylaxis is the goal of therapy as it decreases the number of bleeding episodes and may protect against joint disease and disruptions to quality of life.

At first, the injections will be given at the hospital or clinic, but later on they may be given at home.

Types of clotting factor

Replacement clotting factors can be taken from donated human blood (in which case they are called 'plasma-derived') or made in a laboratory using special cells (called 'recombinant' products). These recombinant factor products are often used more frequently than the plasma-derived products, although it does vary between countries.

The importance of exercise

Strong muscles are needed to support the joints and provide better balance and bodily control. People with haemophilia should therefore be encouraged to be physically active but must remember to take their medication regularly to ensure they are protected. It is important to discuss physical activity with your haemophilia team.

Inhibitors

Many people respond very well to treatment. However, for some, their bodies react as if the clotting factor was a foreign substance. Their immune system then develops antibodies known as inhibitors, which means that the injected clotting factor may not work as well or work at all. The antibodies may disappear spontaneously after a period of regular treatment, or a higher dose of the injection may be needed for a period of time. In some people the antibodies remain and their bleeding must be controlled using a different treatment.

Understanding health economics

What is health economics, and what does it mean for me?

Health economics basically refers to all the financial aspects (money issues) around people's health. It's a broad area that includes your personal finances, the costs of care, and the overall cost to a society. An important aspect is how limited resources - the available budget - are used for existing and future health care to provide the greatest possible benefit to people's health.

All these issues are connected. If a person with haemophilia, for example, is able to work and earn an income, there are positive effects for the quality of life of the individual as well as for society as a whole.

Having a job means earning an income, and with an income comes freedom. Of course, earning an income also means paying tax - a contribution to society that helps pay for public services, welfare, schools, government and resources for everyone within the community.

The overall area of health economics looks at all these aspects, from both the individual's point of view and from society's.

What can I do to improve my quality of life?

Everyone faces different circumstances, and therefore treatment varies between patients. So it is important first of all to speak with your haemophilia treatment team. They understand your condition and your circumstances, and the team is your best source of information and advice.

If you are not already a member, you can also consider getting in contact with your local patient organisation, which can provide support, advice and more information. The people there are dedicated to improving the lives of people with haemophilia, and can keep you up-to-date with the latest developments. They can also help you get a better understanding of your rights.

With input and advice from your haemophilia team, and information and support from your patient organisation, you can make a plan for your own future.